One New Winner Announced!

I am so sorry to have to do this, but I need to choose another winner.  I never heard from you Bulldoghiker, and according to the rules your win no longer counts.  The good news for the rest of you I want everyone to have another chance!  I ran the random number generator one more time (removing my previous two numbers) and Lucky Number 6 is my winner!

RANDOM NUMBERS 

Random number between 1 and 11 6

Congratulations Crystal @EatDrinkClev!!  Crystal please send me your mailing address so I can have this awesome Migraine Relief Kit sent your way asap! 

My Excedrin® Migraine NYC Media Event plus the 2 Winners of my giveaway!

Back in November I was invited to New York City to attend a truly special Media Event put on by Excedrin® Migraine.  This was the very first media event that I have ever attended and holy moly was it incredible!  Right from the get go they told me that they wanted this trip to be "As Headache Free as Possible".  And from being picked up at my door, driven to the airport, picked up at the NYC airport and driven to my hotel I was off to an amazing start!  Door to door service is not something that I am used to but goodness, I could sure get used to it quick! Lol.  After checking into the hotel I was then treated to an amazing Swedish Massage at the beautiful Oasis Day Spa inside the Affinia Dumont Hotel.

a relaxed and happy Amie after my massage

After a quick shower our entire Blogging Ambassador group plus the PR crew and the people of Excedrin Migraine went out for dinner and a meet and greet.  It was so much fun getting to know all of the other people in our team!

a few of the new friends I met on my trip

After dinner a few of us weren't quite ready for the night to end so we headed off to Times Square to play around and have some fun!

My Times Square buddies were Kristin from Our Ordinary Life, Jennifer from Double Duty Mommy and Toni-Lynn From Delightful Chaos. 

Can you believe I also actually randomly ran into my brother-in-law in the middle of Times Square who was also visiting for business?  What a small world!

Then it was off to bed, we had a big day tomorrow!  Normally I have a difficult time sleeping alone.  But this bed had to have been the best night of sleep I have ever had in my entire life!  I even got to sleep-in and ordered my first room service.  Great start to my day for sure.

11:00 it was time to meet with our group and head over to Harold's Square for the Excedrin® Migraine Media Event.  It was a gorgeous day- very cold, but the sun was shining and not a rain cloud in the sky!

From Top to Bottom, Left to Right: Our entire Excedrin Migraine Ambassador Blogging Team,

Sign welcoming us to the media tent, the huge area set up with complimentary massages and one of the massagers, beautiful downtown NYC with Macy's very perfect slogan "Believe", and me with  a well know Internist Dr. Peterson who also is a migraine sufferer making her thrilled to be working alongside Excedrin Migraine.  

And now for the best part... The very special guest for this event was none other then the singer, actress and Broadway performer, Jordan Sparks!  Jordan's mother is a chronic migraineur and much of Jordan's childhood memories are of her mother ill in bed, surrounded in darkness and taking medication in hopes to ease her painful migraines.  Migraine disease is a genetic disorder and unfortunately Jordan has begun experiencing migraines the past few years herself.  When she was approached to join the Excedrin® Migraine team she jumped at the opportunity.  It is something she very strongly stands behind and hopes that there will one day be a cure for al of us sufferers.

yes that's right, as you can see, me and Jordan are BFF's now

Jordan was an absolute delight!  It is no wonder that her talents have gotten her so far in her young life. She was not so caught up in fancy life to take time and chat with us after having our pictures taken with her.  And let me tell you, she is even more beautiful in person then she is on screen- talk about perfect skin!

Jordan spoke to everyone about her own migraine pain and she told us how much the Track Your Migraines app from Excedrin® has been so helpful in keeping track and staying under some control of her migraines.   When she was done speaking she graced us with a beautiful and very moving song Faith done acapella.   What a special thing to be in the front row for!

And guess what?  I recorded her so all of you can enjoy her as much as I did!  She comes on right after Dr. Peterson.  You will love it!

Wow what a whirlwind this trip was!  Although it was only two days it is one I will truly remember!  The lovely people of Excedrin Migraine were so very gracious and did everything they could to make our stay and this event a special one.  And for that I thank them all so much!  It really was awesome.

Now I am home and have continued testing out the Know Your Triggers app for the past month.  And honestly I have found it a great tool.  Life sure gets busy around the holidays and no matter how much I try to keep myself relaxed it can become a challenge.  And for me, added stress, weird weather (changes in barometric pressure) and hormones are my leading causes for migraines. Well perfect timing really, I have been using the app from Excedrin® Migraine A LOT.  And unfortunately it was due to increased headaches, both migraine and my ON and TN attacks.  But at least I had a fun new toy to help make the most of it.  I understand why they did so much to make our trip last month a memorable one.  It really is special. The more I used the app, the more helpful charts and diagrams I was getting from my information I was entering.  It would show me that other triggers along with the ones I already know are also to blame for my pain.  Lack of sleep, or poor sleep also can bring on a migraine when coupled up with the others, making them hit me faster or last longer.  I will be meeting with Dr. D in a few weeks and I can't wait to tell her all about this.  It is right up her alley. Then I can set up for all of my charts to go directly to her.  I know she will find it helpful for not only me, but for her other migraine patience as well.

If you haven't already done so,please go and download the app at MigraineResource.com or from the iTunes apps store (don't forget, it's FREE!) and visit the Excedrin® Facebook page to continue your journey to a pain-free life.

And now for the winners of my giveaway!!!  I chose TWO winners using the Random Number Generator at http://www.randomnumbergenerator.com and the winners are:

RANDOM NUMBERS -

Random number between 1 and 13 10 Random number between 1 and 13 4

Congratulations to both Mindy Utz and Bulldoghiker!

Bulldoghiker, I do not see your email attached to your profile, unfortunately if you do not get back to me within 48 hours I will have to choose another winner.  I look forward to hearing from you!!  You two are going to love this stuff!



I am a paid Excedrin® Migraine blog ambassador. Along with compensation, one iPod Touch to test the app was provided by Novartis Consumer Health, Inc., the makers of Excedrin® Migraine. Along with compensation, the Excedrin Migraine® Relief kit and travel and accommodations to attend the Jordin Sparks media event was provided by Novartis Consumer Health, Inc., the makers of Excedrin® Migraine; my journey for a migraine-free experience is my own.

Being True to Oneself ~and my 1st Giveaway! Giveaway is now CLOSED!

Wow, it is amazing how life can take a turn on you when you least expect it. For the past five and a half years I have been living in frustration and anger that I had to be the one to suffer in this way, with these headaches. I've kept it a private matter for the most part, really only talking about it with my closest friends and family, and even then I tried to keep things to myself. I never wanted to be looked on as a Wendy Whiner, one who complaines and is always "woa is me." But I've realized it was wrong. By doing this I wasn't being honest. I wasn't opening up myself to those who love and care for me- and for those I may be able to help along the way. Honestly I have probably made my road a much more difficult one.

If you have been following me here you know that since the beginning this blog was created as a way for me to come to terms with my chronic illness.  I wanted to not hate that part of me, because I knew that this did absolutely no good.  Sure it sucks!   But I needed acceptance on my part so I could move forward on this journey.  Until I did this, I couldn't truly allow others inside- I was critical enough of myself as it was.  So along my way I have also found myself getting closer to God.  Prayer isn't just reserved for Sunday mornings at church or laying in bed at the end of the day.  I pretty much have an inner constant dialog with Him.  I ask for strength, for healing of course and also for me to become brave enough to let others inside.  I couldn't do it alone anymore.

Little by little I opened up about my illness.  I would allow it to come out in conversation.  Well guess what?  More and more people would say "You too?!"  So many others out there also were struggling with migraines, daily headaches, or maybe even another chronic illness of their own but felt very much the same as I did.  It felt so good to know I wasn't alone and to be able to share some of the amazing resources I have found along the way.

The more I opened up the more I found that things were opening up for me as well.  You may have noticed that little badge on the right hand side announcing that I am now an Excedrin Migraine Ambassador!  Excedrin® Migraine is the #1 neurologist recommended over-the-counter brand for migraine relief. It offers convenient and effective relief for migraines and was the first non-prescription medicine approved by the FDA to treat all the symptoms of a migraine.   And they wanted me!!

When they contacted me and asked if this was something I would like to be a part of, without even needing to spend anytime in thought my answer was a huge YES!  Here was my opportunity to share with all other sufferers out there that they aren't alone and that there is a new tool out there to help them reach a healthy and headache free life.  Holy Moly!  Talk about an answer to my prayers!

The makers of Excedrin® Migraine developed a new app, My Migraine TriggersTM, with a leading neurologist that is available for free on iTunes. With this app, migraine sufferers can track their migraine triggers and gather the data put into reports and charts that can be easily shared with physicians.

How cool is that?! Pretty much one of my other main reasons for writing this blog was a way for me to track my symptoms and triggers to be able to better discuss my treatments with my doctors. Even though I was trying to be concise, I wasn't ever being as thorough as I needed to be.  I tend to vent here more then "track".  According to a recent survey from the makers of Excedrin® Migraine, a large majority of women who suffer from migraines agree that with a better understanding of their triggers (90%) and the right tools to track their triggers and symptoms (83%), they can better manage an attack.   That is definitely true for me!  I was never good at keeping a handwritten headache journal- I didn't always have it accessible when I really needed it.  But I always have my phone on me!  That is where this app is even more helpful.  It is always there when I need it.  I have only just begun using it and already I know it will prove to be an awesome tool.  I am excited to share with you all of my follow up feelings on  the app at time goes by.

Do you keep a "headache journal" or have a way to keep track of your triggers or how often you are getting your migraines? Does it work for you?  I would love to hear your ways of coping so please share them with me in the Comments section!

If you would like to give this app a try, please visit MigraineResource.com to download it. Also please visit the Migraine Center at the Excedrin Facebook page for great information, share tips, and to connect with other Migrainers just like us.

I have some other awesome news! The wonderful people of Excedrin Migraine have provided an Excedrin Migraine Relief Kit for TWO LUCKY WINNERS! This kit contains items that will help us manage some of our common migraine triggers (i.e., irregular sleep habits, loud noises and stress).

To enter Leave me a comment below telling me how you cope with your own migraines.

Get a free second entry by publicly following me, Racing Through my Brain in your Google Reader.  Be sure to leave me a second comment telling me you did so.

IMPORTANT!  I need to have a name in the comment field and if you don't have an email attached to your name, please leave that for me in your comment as well.  Remember, I have to be able to find you if you win!  I am sorry, but No Name, No Entry.  

Giveaway ends December 8 at 10:00 pm.  Winners will be selected randomly.

Enter for a chance to win the 

Excedrin Migraine Relief Kit! 

Sleep Mask 

Noise cancelling ear buds 

Branded Stress Balls 

Herbal Compress 

Branded Water bottle 

$15 iTunes gift card

You are all seriously going to love this stuff!!!!

This journey has already been such an exciting one, and I have SO much more to tell you about!  This past Tuesday and Wednesday I had an opportunity to fly out to New York City to meet with the entire Excedrin Migraine Ambassador Team. This was a once and a lifetime media event that I will never ever forget.  I have tons of pictures to look back on the wonderful memories and the great new friendships made there as well.   Lots, lots more to come.....

I am a paid Excedrin® Migraine blog ambassador. Along with compensation, one iPod Touch to test the app was provided by Novartis Consumer Health, Inc., the makers of Excedrin® Migraine. Along with compensation, the Excedrin Migraine® Relief kit and travel and accommodations to attend the Jordin Sparks media event was provided by Novartis Consumer Health, Inc., the makers of Excedrin® Migraine; my journey for a migraine-free experience is my own.

KAPLOW!

This cartoon is pretty gross.  But then again, what about migraines is pleasant- NOTHING!  And how many times have I said during a migraine I feel like my head will explode? Every. Single. Time.  I completely relate.

Maybe not everything.... but helpful

Am I the only one I know....

Oh how I can relate to this song "Migraine" by Twenty One Pilots. Not my type of music AT ALL, but the message and lyrics are right on.  In the midst of a migraine I have never ever felt more alone. I try to pray when I am in the middle of such pain, but I can't keep any sensical running thought in my head except "I think I am going to die. I think my brain is going to explode in my skull. Or maybe my Skull will explode because my brain is swelling larger then my skull can hold." I have these thoughts every single time. Now I just try and remember to at least add God to my sentences. "God please don't make my head explode. God I think I am going to die. God, please don't make my brain explode inside my skull." Rational thought is almost impossible in the middle of a migraine. This is the best I can do.

You don't really want to know, do you?!

Eye pain a lot today and yesterday.  What did I tell you- I say I am feeling OK and I start to slide back down hill.  It blows.  I guess it was the calm before the storm.  Bummer.  Funny picture though!  Makes me smile every time I see it because it is so, so, so true!!  Anyone else relate?

Almost OK.

Things have been good.  Really good actually.  I almost am afraid to put the words to paper, in that saying it aloud will jinx me and I will get walloped hard and awful.  But I've been feeling pretty OK for a while now.  My ON has really, really calmed down, to the point that I hardly even notice the shocks and ice pick stabs anymore.  I know I am still getting them, but they have been numbed down so much more considering how I was just even a few months ago.  On one hand- It. Is. Amazing. I finally am getting the relief I have needed for so long.  But on the other hand I almost feel like I can't get myself too excited, go out and do too much or almost walk on eggshells in fear of triggering an attack.  And now that I have been feeling pretty good on a day to day basis when I do get a headache, it knocks me out cold.  I have a harder time pushing through the pain and putting on that happy face like I was so good at before.   When I get a "headache"  I get

a HEADACHE.  

I have been noticing that my TN has been the thing that I have feeling more and more lately, which is new for me. I always had symptoms, but nothing too debilitating. Nothing like those people you see on youtube have. But for the past month I have been affected in my jaw big time. I actually dropped my fork when I took a bite because the pain was so intense. This was no toothache.  Every chew sent electric shocks through my mouth, jaw, and ear.  Over and over and over.  It got to the point where I was afraid to eat.  And then it was gone.  G-o-n-e.  And then the "sunburn" feeling came back across my cheeks each time I would use my blush brush.  I don't even have a tan, let alone a sunburn.  But the lightest touch of my soft blush brush would make me jump and twinge like I had beet red cheeks from sitting in the sun too long.  I also got that crazy electric shock in my tongue like I told you about a while back.  It came back just this week; again in the middle of the night.  But it isn't every time.  Not enough for me to feel like I can even really complain when i look at my quality of life one year ago.  I am doing so much better over all.  It just makes me a little scared when new symptoms pop up.

I saw Dr. D last week for my 6 week follow up (we were able to push my 4 week ones to 6 weeks, so I must be improving somewhat).  It went well.  We are keeping me with the dosages of all my current meds (carbamazepine 1200mg, Celexa 20mg, cyclobenzaprine 5mg 3x a day and my birth control of course).  I did ask her to change my abortive because Imitrex just hasn't been working for me like it should.  I asked her about Maxalt since I got a sample from her and it worked in 15 minutes(!).  She said she loved the stuff and wrote me a script.  Got a call from the pharmacy after I dropped it off telling me that for 30 pills it would cost me $200.89!!!  Ok, so there is no way we can afford that.  I asked how much 5 pills would be hoping it would get me al least through the next few months or at least until I saw her next and jest 5 costs me $39!.  Absolutely ridiculous.  A 100% not fair.  I need to call Dr. D back and see what she thinks would work well instead.

So yes, in one way I am doing better, and other ways not so much.  My biggest complaint these days- I'm tired. I am just so freaking tired of taking pills 3 times a day. I wish I could flush them all down the toilet. (I won't because I'm not stupid.) But being chronically ill just freaking sucks.

Chocolate and Vicodin

*source*

Last night was so amazing. I got the book "Chocolate and Vicodin: My quest for relief from the headache that wouldn't go away" by Jennette Fulda out from the library. I started it last night and after just reading the first chapter I truly felt like I wrote it. It was literary deja vu if you will! lol. I stayed up wayyyyy too late reading because I just couldn't put it down- I am already 105 pages in! Please go get this book. It is like reading your own life, which makes it erie in a way. But reassuring as well.

I think I am going to go out and buy this book for my parents and my sister. It is a great way for them to see that it isn't just me. (I don't think they fully understand the extent of what I am going through). As a matter of fact I want everyone to read it. It makes me want to open up myself and actually share my blog with my friends and family. I don't know what it is that changed me considering I talk to my wonderful support club friends about this life of ours every day. But this book hit me on a very deep level.  I guess her openness with the world about her debilitating, invisible, chronic illness just inspires me so much.  She is so brave.  I want to be that brave.  I can't stop thinking about this book. I feel as though she must be my long lost twin sister who shared my story since I didn't have the guts. weird I know. but true.

Every bit of this book felt like it was my story, beginning to end.  Like it was ripped out of the pages of my diary, only Jennette is much funnier ;)  I wish I could go out and meet her in real life, to have such a parallel life with another individual that I have never met before- crazy.

bye bye anxiety

Isn't that the truth!

I have had so much anxiety, it has been eating me up alive.  I am naturally a homebody, but this was getting ridiculous.  If I had more then one thing on my plate I would freak out.  I seriously had no idea how on earth i was going to get it done along with taking care of the house and the children.  When the kids would misbehave it was like it was the end of the world.  I just couldn't keep things in perspective.  I know it is a combination of the side effects of my new medications and just the plain old stress of my ON and TN.  But no matter how much i tried to keep it all together, I couldn't.

I finally brought it up to my Dr. after having a major melt down to Scott about it all and she put me on an anti-anxiety drug called Celexa.  I have been on it since the middle of June and can I just tell you this- I feel like a NEW WOMAN!  I don't feel spacey or strange.  I don't feel emotionless or any of those feelings I was afraid I would feel being on an anti-anxiety pill.  I actually don't feel like I am on anything at all as a matter of fact.  I just feel like AMIE is back.  I don't get stressed out anymore.  I rarely get so overwhelmed with the kids that i need to yell.  I just feel so much happier and at ease.  Thank you again Dr. D!  Hopefully i won't need to be on it forever, but at least right now while I am coming to terms with my conditions, this is a good place to be.

It hurts so good

ANYONE ELSE HAVE THIS? I have been getting this feeling where I just NEED to have my hair pulled, and hard. (no S&M guys, I promise. lol) The feeling of having my hair pulled all over my head is such a release and almost like having a head massage. Usually I can't have lots of head touching because of my Trigger Point Syndrome along with the ON. But lately I want it the other way around. I was doing it to myself for a while and then I finally asked Scott to do it for me. You should have seen his face when I asked him the first time. lol. But oh man, it feels so good yet is intense. Or as my physical therapist says "It hurts so good".

What did Momma Tomato say to Baby Tomato?

....Ketchup!  

Yeah, I know it is a bad joke.  At least I am keeping a sense of humor, right? lol


I am so, so mad at myself. I forgot to take my morning dose of pills TWO DAYS IN A ROW. Now my face feels like it is on fire, my legs ache like I ran a marathon (and trust me. I don't run.) and I want to gouge my eyes out with a spoon. Now I know I can't do this to myself. My tegertol dose is much too high for me to drop so low so quickly. But it was complete forgetfulness. There was even a point today when I was sitting at my kitchen table and I thought to myself "Amie, I dont think you took your pills today." Now did I get up to check? NOPE. argggggg. So now I suffer. What a dummy.

On another note. I am very proud of myself. At my last blogging event I admitted to everyone that I have a neurological headache disorder and even have a blog for it. There were about 15 people there so it was a big step for me. Telling people that I know in real life about this part of me. I know I shouldn't be so nervous. But I am!  It really is silly, I know.  But I am getting there.  Baby steps.

Yesterday I found out that my dear friend and neighbor has a brain tumor.  It has been the cause of her CDH for the past 10 months.  She finally pushed to get some answers and goodness, answers she got.  She came over this afternoon for some coffee and to fill me in on her condition.  I know a while back I said at one point I wished I had a tumor instead of my ON/TN.  Shame on me.  She is being so brave.  So, So Brave. But I am terribly scared for her.  It is in the frontal part of her brain, the best place to get it if you are going to get a brain tumor.  And it is easily operable and easily removable.  But goodness, it is still brain surgery.  Dear Lord please take after my sweet friend.  This all just hits so close to home.

Another Migraine.

had one of the worst migraines of my life this past Thursday. Oh my goodness it was awful. once it hit full force I couldn't lay down, I couldn't sit, standing made me crazy. I was pacing, laying, siting, repeat for what seemed like hours. Just when i was minutes away from going to the ER my next imetrex kicked in. Luckily I was at my moms to pick up the kids so I was able to stay and sleep while she continues to take care of my children. I slept all day long. The icky thing though is that i haven't felt myself since Thursday. no migraine, that passed thank goodness. But I do feel just icky, tired, and achier then usual. sucks.


July 6th Update- I am feeling better today, but it took me almost a full week. I was so afraid I went back to square one before I went on my new medications in December. Thank goodness it wasn't the case. My body just needed extra healing time I guess.

Physical Therapy, oh how I love you!

So as part of my new treatment my doctor put me on a muscle relaxer 2-3 times a day and Physical Therapy. I went to a new PT building which is actually a new athletic/rehabilitation center for the hospital. I CAN NOT speak more highly of the treatment I have been getting there. 100 times better then what i receiving before in the other location!! They are doing warm-ups, stretches, massage, exercises, and the newest thing, traction. OMG I LOVE traction. Have any of you tried it before? They have done both manual and machine traction and both are amazing. I am seeing huge results. I went from having 100's of those stabbing/electric shock pains throughout my day to about 20-30. Some days only a handful. I don't want it to ever end!!!

Ha! I couldn't have said it better myself....

{source}

I seriously think I need to get this shirt.  Like now.  My memory loss is worse and worse and I think the most annoying is how I "loose words" mid sentence.  But I guess it is still a better trade off then CDH at a 7+ 24/7, huh?

Last night the strangest thing happened to me.  I got my nightly "come-down" from the day plus I need to take my next pill headache.  But along with it I got this pain that radiated from the very top of my neck that went all the way down to the bottom of my shoulder blades.  I honest-to-goodness felt like someone beat me up there.  I felt sore and bruised, not only on the inside but outside too.  And as stupid as I felt asking him, I had to have my husband look at my back to see if it was actually bruised up, even though I knew it couldn't be.  Also my nerves all over my body were hyper sensitive.  The lightest touch on my face felt like sunburn.  But I also felt it in my arms too.  So, so strange. Very much like trigeminal neuralgia, but not.  I laid down with a heating pad and took an Imetrex, my nightly meds and then some and just crashed out.  But surprisingly by morning I was fine.  What is happening to me?!!

Good news is that I start Physical Therapy on Thursday.  I am going to a new therapy center that is rated super high, everyone raves about it.  I was there for my MRI and was blown away just by walking in the door.  So that's cool.  I love having twice weekly massages.  Hopefully it will help with this neck pain I have been having.  Next up will be another CT of my sinuses.  Dr. D thinks they are beginning to fill up again.  My pain is around my eyes again and across my forehead and cheeks which is where they were really heavy when I had my sinus issues last time.  It was weird but both she and my pharmacist said I look pouffy and had dark blue circles under my eyes, both indicators of sinus trouble. We shall see I guess!

Living with "The Guilt"

So, I always get this deep guilt whenever my husband pulls out the bills every month and more and more medical bills are in his pile. He tells me not to stress about it and to not feel guilty. But I can't help it! I feel like we never get a break from it!! It is so frustrating- we can never seem to get on top. I just hate all this guilt. Ughhhhhh.

I am a stay at home mom, so I can't even contribute financially to help pay the bills. Then I start thinking that I feel bad Scott even has to deal with this all together. He didn't sign up for a wife that was going to the doctor every 4 weeks like clockwork. I said that to him tonight and he said that if i had to go every day he would be there. I know he loves me and understands. But I still hate how much this is strapping us. If we could direct all of that money that goes to those medical bills to other things....

Migraining.

I got my 1st migraine last night since I upped my dosages. I've had some bad ON attacks, but not an actual migraine in months. It was also my very first migraine that has ever woken me up in the middle of the night. Luckily I was able to stop it pretty well with an Imitrex and go back to sleep. I was sure that Scott wouldn't be able to go to work today becuase i would need him to care for the children. But this morning I woke up in the post-migraine fog, but luckily the migraine itself was gone. I go see my doctor tomorrow where I am sure she will change my daily preventatives. Wish me luck we get it right this time!

Unless you are a doctor, keep your "helpful" comment to yourself.

I get so tired of hearing these things.  And this is just a small handful.  This picture could be floor to ceiling if they were all represented....

Laundry, my Other nemesis!

Still not right.

Such a bummer.  I think I will be changing my meds when I go see Dr. D next week.  My carbamazepine was working really well for quite a while.  And in some ways it still is.  I no longer have my 24/7 headache.  Truly amazing to not live with that anymore! But now my electric shocks are coming to me all day long.  Sometimes they each last a few seconds but more and more often they last me way longer, or are back to back to back.  We went up to the very highest possible dosage at my last appointment, so we are not able to increase it any further.  Something is not quite right with me and this medication and I think we need to look at something else.  We are on the right track, but still not quite all right.

I am nervous.  I know that there are hundreds of meds out there to try, but I am finally used to these side effects.  I know how my body reacts to them and I am dealing with it.  My family is getting used to my forgetful brain and my new occasional stutter.  Now I will have to start all over.  it is a daunting feeling.

How do single parents do it?!

I have had the worst past two days. My husband has been out of town since Sunday so I have a lot more on my plate then usual. I am sure that has something to do with it. Yesterday I went to my mom's with the kids to have a nice afternoon, well the he head pain became so excruciating I went to sleep. Slept 2.5 hours! The worst of my eye pain went away a bit but came back by the evening. I woke up with it again today. So disappointing :(

I was doing SO WELL, and it was really looking like things were turning around. And then it all changes just like that. I am a grown woman and I still don't know what I would do without my Mom!

Of course I spoke too soon

Woke up yesterday in a funk. Just had the feeling of melancholy that is hard to shake. The thing is is that it was a georgous 80 degree day here in Ohio. In March! That is unheard of. Yet I just felt sad.  I baked in the morning which usually makes me feel better and then got the boys outside for a little Vitamin D that we all needed.  The baby was exploring and having a great old time and then BAM!  He got hit with the crankies.  Now he couldn't shake it.  He was crying something awful and there was nothing I could do to make him feel any better.  Snacks.  No. Cuddling.  No.  Oragel.  Hmmmm..... maybe.  Wait- no. He would just start to calm down and then the littlest thing would get him reeling again.  His little scream when I am feeling yucky (OK, not so little) has a way that just needles into my eye and turns it with a knife.  It is just the right pitch to bring on an ON attack.

My sweet neighbor came over with a cup of green tea and some nice company and that brightened my mood a little bit.  It was like she just knew I needed it.  Oh how lucky I am to have wonderful neighbors.  When Owen (or me, to be honest) couldn't take it any longer we went inside for some nap time.  He fell asleep in my arms, Jackson took a great nap without fighting me, and I had a solid 2 hours of quiet time. It was exactly what I needed.  The rest of the evening was nice with the family, with only a little bit of in and out eye spasms.

Today I woke up feeling great, got to enjoy chapel time with my oldest in preschool and then headed for my Wednesday morning Bible Study.  I wish they were every day, I feel so uplifted after.  Then I had a nice visit with my other neighbor friend while the kids played in the yard.  I have been missing these woman friendships all winter for sure!  It is so good to have them back now that we are all out of hibernation.  The bummer though is that i think I sat in the sun a little too long.  I should have known better.  Too much of direct sunlight and heat beating down on my head seems to be another one of my triggers.  But I couldn't help it it felt soo gooooood!  But now all night I am paying for it.  Eye pain in and out in and out in and out.  I feel like I am slurring my words because the pain gets so bad when I get those stabs.  Took 4 advil and the stabbing and jabbing pain has reduced.  Now I just have this strong firey burning in my cheekbones and around my eye.   I took my carbamazepine an hour ago so I am hoping that will kick in shortly and will also help a bit.  I know that I have my vicodin for emergency, but I am kinda afraid to use them.  I don't want to go through them too fast and then have Dr. D feel like I am abusing them or something.  Trying to hold off.  I will be heading to bed soon and sleep is usually a good remedy for pain.

It always seems that when I say things have been great, I get a kick in the head.  Boo.  Let's just hope I over did it in the sunshine and things will be brighter and less painful tomorrow.  My mom suggested I get myself a hat for being in the sun.  I think I will have to listen to her.

The Best I've felt in YEARS

About a month ago Dr. D upped my medication dosage due to the increased head and facial pain. I am now at 600 mg twice a day.  This will be my last upping on this particular medication.  I can't go any higher.  If this doesn't work then I need to try something new.  I also complained about my weight gain, and she said that sometimes it happens until your body gets used to the medication and then you taper off. 

Well last week I went for my 4 week check up and it was so great!  I am still getting lightening flashes, but they are farther and fewer between.  I can clearly say that I have not felt this good in FIVE YEARS!  woot!!!!  I am not perfect, but doing so much better.  I have had one really, really bad breakthrough pain within this past 4 weeks.  There was a bad storm and the barometric pressure changed (one of my triggers).  The advil wouldn't shake it one little bit.  I had to take a hardcore pain pill I had left over from my ER visit and go to sleep for 3 hours to begin to feel better.  When I woke up the stiff neck, trigger point pain was back.  I talked to Dr. D about it at this last appointment.  She finally agreed to give me emergency pain pills and also a muscle relaxer to help in these bad times.  I hope to never need them, but I feel very relieved knowing they are safe in my closet if I do.

Oh!  And I have lost 5 pounds!!  I actually did a little cheer  when I stood on the scale at the office.  The nurse laughed at me and said that she doesn't get that all too often.  It looks like my hard work reducing carbs is working.  That and also my body might finally be getting used to this medication.  Very cool!

I actually am beginning to feel like a normal person again.  WOW.  You have no idea how bad your conditions were until they are fixed.  I am so greateful.  It sucks to have a diagnosis that may follow me the rest of my life.  But it makes it not so bad when I also have a great doctor and medication to help me (almost) forget about it.

OK, I confess

So I have been known to do this from time to time... lol

Love this!!! 

Beauty out of Dust

"You have a headache again?"

I can't tell you how often I hear that comment. Ummm, yeah. People just can't get their mind around the fact that I live with head pain 24/7. I think most people think I am exaggerating. It is so frustrating.

Occipital Neuralgia is NOT JUST A HEADACHE! It is a neurological condition that resides in the head. So often I am just so tired of trying to explain my condition due to the blank stares and sad faces people give me when I tell them about my head stuff. So I try to avoid it as much as possible. Put on my happy face and push through it. The only problem is I know my face is a tell-tale book. almost 100% of my pain is behind my eye. When I get the lightening flashes instantly my hand goes up to my eye to press and give some relief. People see my hand pressing into my eye and ask if I am ok. It is a reflex and I would stop it if I could. But instead I have to try and explain. I am so tired of it. I wish I had a better quick answer for them. blah.

The thing is is that I AM a happy person. I love life and love all that God has given me. I feel so very blessed. I am just a happy person living with chronic pain. Often times I feel as though I am living a double life. One side is the Shiny Happy People Holding Hands life. And the other is the pill popping, eye gouging, head grabbing life. Still trying to figure out how to make the two work in harmony together....

vent.

I have had a rough couple of days. I am beginning to notice my bad days seem to fall on weekends. Maybe because I try and do more since my husband is home from work. We like to do stuff and spend time together as a family. For the most part I am a homebody and me and the kids like to stick to routine. When we veer off routine the kids don't do too well, and it looks like me neither. lol.

But my baby also had tear duct surgery on Thursday, so that was super stressful. Stress is a major trigger for me headache wise. Now he has all sorts of drainage from the surgery causing him to cough and sneeze, his nose is runny so much and I am just stressing as all moms do. This doesn't help my head one bit. And now tonight my oldest son threw up all over his bed. UGHHHHHH.

I have not only been having more head pain in the back of my head, but my eye pain seems to have returned (BOOOOOOOO!!!) plus my cheek bones just ache and burn, and I notice my jaw has been hurting too. Maybe I do have some of that TN like Dr. D said I had. I really didn't think so, but i am noticing more and more facial pain lately.

Probably my most frustrating as of lately, is my recollection has been sooooo bad too. I can't remember ANYTHING anymore. It is so frustrating; I will be in the middle of telling a story and then have to stop mid way because I can't think of the word I was looking for. It is embarrassing and annoying. My husband is so patient, but I am sure it is frustrating for him too. I feel like I am a woman on menopause- only I am only 33. I used to have this strange talent that I could hear a song once or twice and i would know all the lyrics to it. I didn't have to even like the song. i just knew them all. Well tonight at my nieces bday party my brother in law brought out the guitar and everyone was singing along. It was so fun! But could I remember a single song lyric. No. I would remember bits and pieces and then just completely loose the rest. not so helpful or fun at a sing a long.

Tonight my mom was giving my head a rub, trying to help relieve some of my pain. This was always one of my most favorite things in the whole world. My mom is amazing at head scratches and rubs. I used to LOVE when she would play with my hair. I would fall asleep to it all the time. Well tonight she kept hitting trigger points in the top of my head and by my temple. I kept giving her more and more places she couldn't touch. It stunk. I hate that my illness seems to be getting worse instead of better. I used to be so normal.

So not only is my pain back and worse, but I am gaining weight, forgetting my words and can't spell. This sucks.

I always sleep with a fan on. Not for the cool air particularly, although that is nice. But I need the white noise. Wouldn't you know it, my fan broke. And it is the middle of February so who has fans in Ohio in the middle of February? No one. Thank goodness there is an App for that! I have been using my husbands itouch the past few nights and it is a life saver.

The Good, The Bad and The Ugly

The Good
The good news is after being on my upped does of medication (tegretol 400mg 2xs a day) I am thrilled to say I have been 90% pain free or just very, very low pain days for the past 7 days.  It is amazing!!!  I can't even begin to explain what it feels like to wake up in the morning and feel awesome, go all through my day  feeling awesome, and then going to bed feeling just as awesome!  For lack of a better word it is AWESOME.  I forgot how nice this is.  Nice is an understatement.  I feel positive and ready to conquer the world.  I have more skip in my step and feel like I can do so much more in my day.  I am still trying not to over do it because Dr. D said to watch my activity levels on "Good Days".  I have a tendency to over do it and then pay for it with a really, really bad day after, and day after that, and so on.  She said I need to ease into my pain free, low pain days.  So I have.  And I keep waking up feeling great.  Although I keep waiting for the bomb to drop and a major migraine or ON attack to show its ugly face.  But so far I have been in the clear.  Prayers that we finally found the reason for my CDH and I can be good from this point forward!

The Bad
I say 90% because I do occasionally get my ON electric shocks, but they are fewer and farther between. I can't tell you the last time I had to take an advil to dull the pain making it possible to last through my day. It's cool right?!  Well, this past weekend I was super duper busy, my son had a doctor's visit to schedule a surgery on a blocked tear duct on Friday and i accidentally missed my morning dose of meds. Saturday all day I was busy making a picture collage to celebrate my sister's 40th birthday that night, so again I forgot my morning dose.  So unfortunately that night I was all out of wack.  This was the first time I truly felt any real deal side effects.  I had nausea, dizziness, and all over spacey-ness.  It was just plain weird.  I didn't feel myself at all.  It was my sister's 40th birthday party and I was so excited for her and I wanted to be there for her more then anything.  So I pushed through it and had a nice time.  But I really wanted to have a crazy great time!  Truthfully I would have rather been in my bed.  How much does that suck.  So now I know never to do that again.  I will not only be the girl with the morning and night time 7 day pill boxes.  But I will also never go anywhere without a spare dosage incase that ever happens to me again.

The Ugly
Just a few months ago I went on the South Beach Diet to finally drop the rest of my pregnancy weight- probably some of it left over even from my first to be real honest! lol.  I did it and really felt good about myself on the outside again.  No more tummy, my face was thin, it was like the old days and I was sooooooo proud of myself.  17 pounds gone, down 2 pants sizes and almost down one more. Now meet my lovely little Tegretol.  When I started my meds I was thinking "Now I am skinny and pain free!  Rock on!!!"  I am crazy thrilled to be pain free- or at least pretty darn close.  It feels incredible.  BUT (there always has to be a "but" doesn't there...) I am also noticing another side effect.  The worst in my opinion.  The dreaded weight gain.  UGHHHHHH.

I just worked so, super hard to get those 17 pounds off and now I am slowly seeing them creep back on. What good is it to be pain free if I feel like shit on the outside?  I feel fat, self conscience, and just so, so disappointed.  It sucks.  I am definitely bringing this up with Dr. D when I see her in a few weeks.  I have read how some never notice any sort of weight gain while other people gain something like 40 pounds on these kinds of meds.  Of course the only side effect I am noticing is the shittiest one.  So. Not. Fair.  I don't care if I sound vain.  I don't want to take a pill that makes me fat.

Even if it takes my headaches away.

one poke vs. another

I was talking to one of the girls in my support group and after listening to her recent treatment I think Dr. D actually wanted me to get a supraorbital injection, because that is what she was explaining to me in her office and why she was sending me out to the optical neurologist. Dr. D said these are right above the eyebrow and hit the trigger points there.  Well the optical neurologist gave me a nerve block instead in the back of my head instead. I wonder how different the two of them actually are? Hmmmmm.  The girl from the support group said that the nerve blocks never really did much for her, but the supraorbital injection hurt like hell getting it, but she felt a lot more relief since most of her pain is located directly behind her eye.  That is where my pain always was, that is until my new meds.  Now the eye pain is almost 100% gone, but now I have a lot of back of the head pain still....  guess I don't need it now, but a little annoyed that I got the wrong treatment to begin with and that the stupid nerve block gave me so much "angry" nerve pain.  I am wondering if that means I could never get another nerve block using a different medicine or if there is something else that could be used back there.  I had good luck with lanacine in my neck.  I wonder if she could use that? Hmmmmmm.  Stuff to think about and to bring up to Dr. D at my next appointment.

And you know what, that neur never gave me any anesthetic in the nerve block at all.  Just the steroid. From what I read this is very, very uncommon.  Many injection treatments begin with anesthetic and if that works then they try the steroid at the follow up nerve block.  And almost all nerve blocks include BOTH the steroid and the anesthetic.  No one I have spoken with that has had this treatment had it like me.  Sounds like he didn't follow protocol for this particular treatment.  Jerk.  Thanks a lot.

This cracked me up! Wouldn't it be nice...

It's like a caffeine buzz, minus the actual caffeine...

You are up super duper late and wake super duper early, or maybe you just drank waaayyy too much coffee in a short amount of time....You know that feeling you get in your head where it is just swooshing around a million miles a minute, you feel like you just need to give it a good shake to settle it down, but of course that does nothing.  You feel like you could talk and talk and talk, about, well nothing really.  But yet, you have so much to say... THAT is how I feel today after my third set of increases on my tegretol (Carbamazepine). I have jumped up from 200 mg twice a day to 400 mg twice a day. I definitely feel that this was a good plan of attack because I could tell the medicine was working, but not yet to it's full potential.  We'll see how this turns out.  I didn't have any weird side effects last time, but this time I definitely feel super speedy. Even as I type this, my fingers are going way faster then i can even think.

Thank goodness for spell check.

Isn't going to the doctor how YOU choose to spend your birthday?

Happy birthday to me! So I got to see my doctor today- isn't that what everyone chooses to do on their birthday- go to their doctor?! lol. It really was a great visit, though. I always leave her office feeling so positive and with so much hope. I ♥ her. Anyways, she is upping my tegretol and decreasing my beta-blockers (which I take as preventatives for my migraines). She thinks I wont need the beta blockers since I am on tegretol. Fingers crossed that I don't get dumb, can't spell and get migraines all at the same time!  

It looks like I am having increasing tension and pain in the muscle in the back of the head, the same one that controls your eyebrows and forehead.  When this muscle is sore and inflamed it is triggering nerve pain in the side and back of the head.  She gave me a 2 week rx for Naprosin to get the inflammation down.  I go back to her in one month for a follow up.

Both of my kids go to a different doctor at the same family practice. The one they usually see has always made me crazy. I always got the feeling that she and I could be friends if I never met her in the office. But as a doctor of my kids I never really liked her. She just kinda rubbed me the wrong way.  I mean, how many doctor's that deal with children don't know how to put a diaper on a kid?!  Or never ask about milestones.  Or really just seem flighty in general.  maybe we wouldn't be friends..... Anyways, I was in the process of looking for a new pediatrician at the same time I was going to start searching for a new GP for myself. Low and behold that is when Dr. D arrived at the office. She not only specializes in women's health, but children as well. If that isn't a sign I don't know what is. I officially moved myself and both of my kids to her today.  *two checks off the BIG list!

Yes and No.

So after watching about a gillion videos on youtube about Trigeminal Neuralgia I am about 98% sure that I don't have it.  That's a good thing!  I don't have the kind of pain that all of these people are describing.  Although I do live with daily chronic head pain, I wouldn't describe it at all like the way these doctors and sufferers do.  Their pain is excruciating and completely debilitating.  They can hardly eat or brush their teeth.  It hurts to wash their face, etc. etc.  Although I do notice odd things; yesterday while putting on make-up my cheeks felt like they had sunburn on them after rubbing with my powder puff (I am still pale as snow white), or while brushing my hair with a bristle brush, my scalp is sore and feels like it burns a bit.  I couldn't say that it is excruciating, just strange and uncomfortable for a little while.  But then again I am feeling this while on my meds so maybe it is decreasing the pain?  Maybe my trigeminal nerve is inflamed or something, but I don't think I have this full blown condition.  *phew*

I DO agree with Dr D's diagnosis on Occipital Neuralgia though. After my all of my research and study, all the youtube videos and countless conversations with other sufferers on my ON support group, my pain is just like theirs.  It isn't as severe as some and more then others.  But the locations, and type of pain is like listening to myself.

My medication seems to be working really well over all.  I don't have all day, constant pain as I did before the change.  Actually today and yesterday I have had hours of pretty much pain free!  It's amazing!  I am pretty sure that Dr. D will want to increase my dosage because even though I am having good days, I am having many bad ones as well.  It seems like just as I get my hopes up, I'm feeling great and think "This Is It!"  And then I have follow up days of yuck.  Maybe I am still adjusting to the meds, who knows.

Tomorrow afternoon I go for a CT Scan to follow up my sinus's and then Thursday I see Dr. D to discuss everything.  We'll see what happens.

Still Happy After all These Years

I had been avoiding making a blog like this for some time.  Not because I didn't need a place to vent, share and record my pain/treatment- I did! But I didn't want to come across as a Wendy Winer, a woe-is-me, lets throw a pity party kinda girl.  I am happy!  I really am a positive person.  Anyone living with chronic pain will tell you that they keep most of their daily pain levels inside and try to push through the pain.  No one wants to live bedridden, missing out on all the fun, or to be known as The Girl With The Headache (or fibro, RA, etc.  fill in the blank with your own chronic illness).

I have two amazing children and the most loving and understanding husband.  I would give anything for them!  And so I do just that.  I push, and push, and push my way through the day.  I don't want to miss out on a single thing that my family has to offer.  I love my life- all except the head pain and neurological disorder of course.  But it is a part of me now.  Like I said in my first post- it is my new normal.  These illnesses have no "cure".  Yet.  I am still remaining hopeful.  So now I just need to find the best way to deal with it.  Just ignoring it and shoving inside my own head isn't going to work anymore.  I think my head has enough to deal with now!  So I need to come to full terms with my chronic illness, not be ashamed of it; embarrassed to share that side of me anymore.

So on one hand I wish my family and friends could really and fully understand what it is like in my shoes. What my pain is like, what I deal with on a daily basis. How this isn't "just a headache". But on the other hand I find I have a hard time talking to them about it.  I try so hard to have a "normal life" and not let my pain rule my life that so many just have no idea.  But I need to Woman-Up!  This blog is my first step.

Baby steps, right?

A little empathy goes a long way

Tracking my Carbamazepine increase

January 5- Today I do my big increase of my anti seizure meds. Nervous I am going to turn dumb :/

January 9- Well I have been on my increased meds for 4 full days- today being the fifth, and I feel SO much better. I think my doctor finally found my condition and the right med to treat it. Friday I actually had a PAIN FREE day! I have never had one of those except during the time I was pregnant (I promise I am not preggers...lol) Granite, Saturday I had a pretty good headache most of the day, shooting in and out. But then Sunday's pain was hardly noticeable. So I think my meds are really starting to do their magic. I just need to remain patient and stay positive.

January 12- I have decided to make this blog public.  I need a place to vent, someplace for my family to really understand what I deal with on  daily basis and what my strange diagnosis means, and why I have to see my doctors so much.  Plus now i have a way to track everything more accurately (goodness knows how much I suck at my headache journal....)

Tracking Carbamazepine Side Effects/ Treatment

December 30- I found that in the middle of the night I got this "off" feeling and has a bit of nausea. But probably the most annoying was I had a bit of insomnia! I had the hardest time falling asleep and then staying asleep. OK, I am only on day two, and on a really low dose (I am slowly working my my way up). But I am feeling a bit hopeful. In the spot behind my eye where I have had my most intense, constant pain for the past 5 years I now can best describe it as a "void". I am so used to constant pain, with shooting pain on and off. And since last nights pill I have zero pain or pressure! It is amazing.

I always would tell my husband if I could just take a knife and cut out that one spot I would feel so much better. Well now it is as though exactly that has happened. That is why I used the word "void".

December 31- So as of today: no nausea today and also no insomnia last night. I took my pill 4 hours earlier then the night before in hopes of offsetting the sleep disturbances, and I think it worked. I also feel much more chipper and less frazzled then usual. May have to do with less headache pain or could be the meds- who knows. But so far I am loving this stuff. I want to go hug my doctor. After 5 years of no one knowing what was wrong with me, I was at first very discouraged and afraid with her diagnosis. But as long as I have a med that actually works, I guess it isn't such a scary outcome. Until next Wednesday I am at 100mg a day once a day. After that I jump up to 200mg twice a day so I can only imagine how it will work even better then. At least I would assume so! One thing I have noticed that although I no longer have the pain behind my eye and the back of the head, I am acutely aware of my cheek bones.  I know that sounds weird, but it is a strange feeling.  They don't necessarily hurt, but I do have a constant "sensation" and slight tenderness. Almost like sinus issues. The Trigeminal nerve is located there and this drug is specifically used to treat that one. So so far it is definitely working on the occipital nerve but I think I need to up the dose to notice it working on the trigeminal.

January 1- I get to move up my dosage on Thursday. I've noticed I still have headaches, but in all new places then I ever had before. Its weird. But I hope those settle up some once the stuff is fully in my system and I am on a complete dose. This may be vain, but I must admit I am glad weight gain isn't a side effect for this medication! Honestly I think I would have told her I wanted something else if I was going to gain 30 or 50 pounds....

so far I don't feel trippy at all on this stuff. But I do have lower backache that is uncomfortable and annoying.

later in the night of January 1- Ok, it has been a few hours and now the whole side of my face/head is in serious pain along with my new lower back pain (medication side effect) so I decided to take some pain pills. AHHhhhhhhh. So nice to get some relief finally! I never take narcotics for this stuff, but tonight I just couldn't take it any longer. Glad I finally caved.

Follow up with Dr. D and an Official Diagnosis

December 28- I had one of the best visits with my doctor today. Lots of talking and testing. She is amazing! After not being taken seriously for so long, I can't stress how much I appreciate her! Looks like I do indeed have a form of Occipital or Trigeminal Neuralgia or both!). I asked her about what the Optical Neurologist said, about the nerve block not working if I didn't have Occipital Neuralgia. My pain has been increasingly worse since the injection, not better. So what does this mean?! She that that basically I have an angry nerve (Grrrrrrr!).  It didn't "agree" with the type of injection and is now mad and lashing out at me, causing more increased pain. This is I guess another way of knowing that the shot did something proving I do have the disorder. If I didn't have it then the shot would have done absolutely nothing at all.

So I am trying out a new medication starting tomorrow to start relieving my nerve pain and will be slowly weening off my beta-blockers.  She wants to see if my migraines come back off of them or if my pain is primarily nerve related. Nervous but hopeful!  We have a plan of attack! (Hi-Ya!)

I think I am mostly nervous about going off the labetalol. I didn't need it while I was pregnant this last time; guess my hormones fixed my issues. But once I gave birth I had the most crushing migraines that I just couldn't shake. I can *almost say my migraine pain was worse then my c-section pain. The house doctor put me back on the labetalol, I had one more migraine and then I was back to my normal 2/3 daily pain level. Dr. D says that I will be seeing her regularly, so I won't be left in the cold in serious pain if i need it still, or something else better.

Anyone familiar with Carbamazepine? That is the new med she is putting me on. It's an anticonvulsant. Actually now that I think about it, I think it is the same stuff my crazy college roommate took for her epilepsy. FYI, It wasn't her epilepsy that made her crazy, I think she was just crazy naturally... accused me of stealing her stuff, would flip out on me for no reason, oh goodness a whole mess of stuff. But enough about her, yuck. So anyways...

Dr. D wouldn't prescribe me any pain pills right now. She said that if this is indeed all nerve related and that I did have this neurological disorder, then this medication would work as a pain pill, so to say, on the over-reacting nerves in my head. I hope she is right, because my pain level (even on my beta-blockers) has gotten up there again. My daily pain is now closer to a 5/10 and taking 4 Advil many times doesn't even cut it.

Along with my 300 mg of Labetalol, I will start out on 100 mg of Carbamazepine once a day for one week and then jump up to 200 mg twice a day after that. I am then scheduled to see her again in two weeks to discuss my pain levels, how the new stuff is treating me and then to work out a schedule for going off the Labetalol. She says that the Carbamazepine is a low does, so not to be surprised if I need to increase the dosage until we get things just right. She really wants me to be a "one pill girl" and not need to take all sorts of things to feel "normal". Oh goodness I hope she can do it!  We shall see.

Even a haircut can be dangerous

December 23- Yesterday the craziest thing happened to me. I was at the hair salon to get a haircut. My hair was being shampooed by one of the girls (they are amazing at this! I always found it super relaxing for they give you a head massage during it). Well the girl started massaging on the sides of my head next to my temples and behind my ears and I got instant pain! I almost jumped out of my chair it was so bad. I am thinking it was trigger point related because I had one taken care of a few months back in my neck with an injection. But I have never had anything like this- intense on the spot pain just by touching.  I will definitely have to bring it up to Dr. D when I see her next....

My neuro was kinda jerky. Oh and I got a shot in my head. OUCH!

December 19- ugh, woke up today with a pretty bad headache. It is usually bad news when I wake up with a bad one, and generally turns into a migraine. I am sure it is stress of my appointment , plus my little one was up more then usual. I have found that when I don't get enough sleep I my headaches increase. Praying for some much anticipated answers today!

December 20- I had my first Greater Occipital Nerve Block done yesterday down at the Cleveland Clinic. I definitely had more relief from the trigger point injection my own GP did in her office than in this nerve block. I honestly don't think it did anything except cause me pain in the back of my head.  Right now I am just sore at the injection site still. I am wondering how long it will take for me to notice a difference?

OK, so my appointment was FINE. I sat and waited A LOT. They did a million eye exams, dilated my eyes and then did more exams. After 2 hours of being there, Then the actual Optical Neurologist came in, listened to me describe my pain and told me that I do indeed show examples of Occipital Neuralgia, but not completely. He gave me a steroid shot in my occipital nerve and if it works then I have a form of Occipital Neuralgia and I will need to go back every 3-6 months to get this shot. He said that the majority of my symptoms sound like a condition called , get this, CHRONIC DAILY HEADACHE. Uh, yeah. I felt like face-palming. I wasn't crazy about the care that he gave me. He didn't explain anything, give me any advice, or tell me what to expect. All he did was tell me "OK, I am going to reassure you, this isn't going to hurt ME at all!". Thanks a lot jerk. He told me that I should actually be going to the Headache Center here at the clinic and gave me a name to refer to. Told me that I should be changing my medication to something that more accurately and better treats CDH. Unfortunately it is a neurological condition and one that I will have to live with but with better pain management.

To say I was disappointed is an understatement. I guess I was hoping I he would find an explanation for the headaches. Why one day I just woke up with one and it never went away. Why?! It seems like there should be a reason for all my suffering, don't you think? My next step in treatment is looking at my sinuses some more.... I have 2 more days on my antibiotic to see if my sinus infection clears up. If not off to the ENT I go for probable sinus surgery.

Thanks to a suggestion from a friend on my Support Group, I put ice on it last night and wow, that fell good! The Neurologist told me that the shot was either going to work or not. No in between. I am thinking that it didn't work on me. I still have my headache behind my eye like always, and he did say that if the shot worked it would at least relieve that. UGH.  We will wait and see....

Optical Neurologist visit tomorrow!

December 18- I am going to an Optical Neurologist tomorrow. This will be my first visit with a neurologist of any kind. I am a huge mash-up of emotions. I am excited to see what they may come up with. But also completely freaked out. What if they find something crazy serious. But also, what if they find nothing at all.... Ugh. I just want it to be over with already. I am to expect to be there at least 4 hours, although it could be more! Any of you see an Optical Neurologist before? What kind of tests do you think they will do that it is going to be such a long day? Send positive thoughts and prayers my way, OK? Thanks guys! xo

Possible New Diagnosis- Occipital Neuralgia

After my last appointment with Dr. D, my xray and CT showed I had a narrowing of the nerves in my neck/spine. With the researching I have been doing the term I keep coming across for the narrowing of the spine is Spinal Stenosis, and it sounds exactly like what she described.  She is sending me for an MRI sometime this month to look at this more closely.

The CT also showed that my sinus's are "a hot mess", as Dr. D. calls it.  She said that of the 5 sinus's in my head, every single one of them is 100% blocked.  She is starting me on a heavy duty antibiotic to try and clear it up.  We we reevaluate them again at my follow up appointment in a month.  In the meantime I am to keep going with my physical therapy.

Follow up: 3 weeks later I was in the Doctor's office for my son (this is a family practice so we all go there)  and I wanted to touch base with her on the status of my MRI.  She happened to not be busy and have a few minutes to chat with me.  She said the MRI showed that I DO NOT have spinal stenosis, thank goodness.  Not sure why the other scans showed something different, but we will go with it.... But what the MRI did show was that my sinus's are still really bad, almost still fully blocked.  She is especially concerned about my Sphenoid Sinus.  This little guy is located right smack dab in the middle of your head behind your eyes.  It is fully blocked.  If not cleared up it can lead to major stuff like meningitis, and other things.  She is putting me back on another, even more powerful antibiotic to hopefully clear it all up for good.

The headache pain that I am always experiencing is located right behind my left eye.  plus I have other symptoms that lead her to believe that I may have a condition called Occipital Neuralgia.  She is sending me to an Optical Neurologist for further assessment.  Apparently there is another trigger point injection that he could perform in his office to help with that and also to help determine if I do indeed have this disorder.  So on to my very first neurologist.....

The REAL Pain Assessment Scale

If you've ever been to the doctor you've seen this cute, yet oh so demeaning Pain Assessment Scale.

I think this one is much more accurate.  What do you think? lol

**Here is the blog post that goes along with  the new and improved pain chart.  It was just shown to me and I LOVE it!  She explains what is going on in each face, and it is so funny.  Be sure you give it a read!  Click {here}

Trying to get up to date...

Up through the today, I have been keeping an informal journal, jotting down notes in my headache journal (although not frequently enough) and updating my pain/medication/breakthrough headaches on my facebook support group pages.  But nothing all in one place.  That is what this blog is intended for.  I wanted a comprehensive guide, if you will, on my ups and downs, plus a place for my doctor to check up on me (Hi Dr. D! *waves*) , or if one of my doctors, etc asks me a question about my recent or past pains, how my new meds are working, etc. I can actually tell them much easier instead of fumbling through my foggy, at times, brain.  I am hoping to get everything up to date this week.  But that is why you see dates listed in so many of these blog posts. I was originally going to set them at the date that I was experiencing each event, but this just seemed easier.  Thanks for your patients :)

I found her!

September 27- The strangest thing happened this morning.  I was bending over to pick up a toy that fell under the couch.  I stand up and immediately have the most horrible migraine headache.  It came out of absolute no where!!!  All I did was bend over!  Now here is the real strange part: if i don't move or don't cough my head doesn't hurt.  The moment I turn my head even a smidge there is the pounding migraine pain.  If I cough I have to hold the back of my head because I honestly feel as though my brain will explode out of my skull.  And of course i still have that bronchial infection so I can't help but cough.  This is a bit scary.

So I ended up calling the doctor and of course I wasn't able to get in to see my own.  Story of my life.  I am at the end of my rope with this place.  I seriously am thinking of looking into a new doctor's office.  They tell me there is a new woman doctor that just started there and she is available. Well, it is either her or the guy who swore there was no way I had a sinus infection in July and sent me home with sudafed.  Sure enough, two days later I am back in sick as a dog to get a zpack finally because I was so bad.  Ugh, did I mention how much this place pisses me off?!  Ok, so I agree to see the new female GP.  I have no real choice I have to see someone.

God was really watching over me today.  He knew I needed a new doctor, but for my head pain/ chronic sinus pain- but also for my mental state. I didn't have time to waste, and he gave me Dr. D. (I am still not sure if I should use any of the doctor's real names here.  So right now I am just using their first initial.  email me if you want real referrals...)  Today I found the doctor who decided there is no way that I should live with CDH for the rest of my life.  She made it seem like even the thought of that was absurd!

Having an actual living person, let alone a doctor say this seriously made me cry.  Unless you have lived with chronic pain yourself you will not understand the feelings and emotions that washed over me that day.  And not only did she SAY these words, this is were I feel my real journey towards healing began.

What I thought was going to be a quick, give me meds, fix me up, send me home appointment, turned into a full 5 hour day of tests: CT Scan of my sinuses, X-Rays of my brain and spine, prescription for some new harsh, super strong antibiotics to clear up my sinus infection, a referral to a physical therapist to bring back movement in my neck and a shot of lanocaine in my neck to relieve the ridiculous migraine attacks stop.

And honestly the very best part of the appointment- she sat and really and truly listened to every single word I had to say.  She listened to all of my symptoms and pains from beginning to end.  She listened to my stories of migraine onset, how the birth of my children started all of this.  How I can't wash my hair upside down anymore or I get a migraine, or flip my head to dry my hair with a hairdryer.  How the change of weather and especially the humidity change or what I learned, the change in barometric pressure can send me reeling to the emergency room.  She listened to me for over and hour, like a best friend over a glass of wine.  Only there was no wine and she and I had only just met.  But already I loved her.  I felt as though I was finally 100% being taken seriously and that she not only heard me but really and truly wanted to help me.  When she said that she swore we were going to get to the bottom of it I cried.  Again.  She didn't just write me a scrip and send me on my way.  She wants to help me.  For real.

As far as what in the heck was going on with my neck, well that was a Myofascial Trigger Point flare up.  There are many, mnay trigger points all over your body. This explanation on the site Life Extension says it well:

When a physician pushes a trigger point in MFS, the trigger point elicits an involuntary "twitch" response. Additionally, the patient may report pain that radiates to an area away from the trigger point itself. This is what is considered "referred pain." The painful trigger point area is in the muscle or the junction of the muscle and fascia. Hence, myofascial pain is usually associated with a taut band, indicating a "ropey" thickening of the muscle tissue.

The fascia is a tough connective tissue that spreads throughout the body in a three-dimensional web from head to foot without interruption. The fascia surrounds every muscle, bone, nerve, blood vessel, and organ of the body, all the way down to the cellular level. Therefore, malfunction of the fascial system due to trauma, posture, or inflammation can create a "binding down" of the fascia, resulting in abnormal pressure on nerves, muscles, bones, or organs.

Much of the pain that accompanies MFS is due to inadequate blood flow to the trigger point area (ischemia) that inhibits the ability of the muscle to eliminate metabolic wastes, such as lactic acid and potassium. These accumulated metabolic byproducts combined with inadequate oxygen flow to the affected area then build up, stimulating nearby nerve endings that lead to trigger point pain.

When I really started to notice Beta Blockers weren't enough....

August 1- wow, what a day. Got to spend all afternoon and much of the evening in the ER due to the worst migraine of my life. Feeling much better after the "migraine coctail" I got, but now feeling spent and weary. Thank goodness tomorrow is a new day. I have had lots and lots of migraines the past few years, but nothing ever like this. I've never needed to go to the hospital before. Luckily the ER knew their stuff and it all worked like a charm. But definitely scary!

September 15- Ugh, I have a sinus infection.  YET AGAIN. And to top it all off I also have this bronchial infection that has me coughing so hard I feel like I am going to break a rib. It is horrible! My primary care doctor today actually gave me an inhaler to go along with the zpack. I've never had a cough this bad in my life. crazy.

When I am not coughing I feel totally fine, aside from the sinus stuff. But when I cough it literally takes my breath away. I think all my chest and back muscles are strained from it! But luckily the inhaler seems to be working out great.

September 26- ugh, this head cold and cough are kicking my butt!!! I was on the mend and now all of a sudden I feel like it is full on bad all over again. I hate to have to go back to the doctor. crap.